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Episode this morning


Suzan

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This morning started out with a 20 minute episode because dd8 could not figure out correctly how many hours she slept. She would not let me help her but begged for help. She called herself stupid for not being able to figure it out. She sat at the top of the stairs and cried and moaned and whined and beat the floor and asked "why, why, why did I try to figure it out this morning. It ruined everything!"

 

The thing is, sh'e so smart. She ended up writing down a pretend school schedule that mimicked the hours she slept. Once she figured it out, it was over and now she's fine. This happens with her homework a lot. I told her teacher that I often won't correct her mistakes because it will send us into this for the rest of the night.

 

My trouble is I don't know how to not get engaged. I feel like I don't have what it takes to ignore her. When she is like this, the anger and fear and frustration builds up inside until I feel crazy. It only makes it worse, for her to see me upset or angry. I know this but I can't seem to just stay calm. It upsets her if I ignore her and it upsets her if I respond to her so I have no idea what to do.

 

At least it only lasted for 20 minutes. It would have been hours before. In the middle of it I had her pop some motrin and L-Theaning. Maybe that helped. Now she's fine and I feel drained. I've felt like the abused parent for a long time.

 

Susan

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I don't have any good advice but I totally get the frustration :D My dd (I suspect pandas but she is not diagnosed pandas) will do that too when she is in that mode... she will scream things at me if I answer her but if I don't answer she will scream about my not answering her. It always feels like such a lose lose situation. Hugs!

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I'm sorry your day started like this. It's normal to feel like the abused parent. That frustration that builds up in our gut is so hard to suppress sometimes. I've said things I've regretted a second later. I really have found that leaving the room , pacing, counting to 10 over and over and over, etc is really the only things I can do try to get over that frustration and anger hump. Maybe even a stress ball you can squeeze over and over will help. Just something to filter your frustartion.

 

If you want to try to help her, and I have a feeling you've done this already, take her hands into yours, make eye contact, and breathe with her. At first my son fought it but now he'll actually tell me he needs me to help him breathe a few more time. I do the basic "Take a deep breathe, pause, now exhale slow". Don't tell her to get over it or it doesn't matter about calculating things because to her it is everything at the moment. She'll think you're against her.

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This morning started out with a 20 minute episode because dd8 could not figure out correctly how many hours she slept. She would not let me help her but begged for help. She called herself stupid for not being able to figure it out. She sat at the top of the stairs and cried and moaned and whined and beat the floor and asked "why, why, why did I try to figure it out this morning. It ruined everything!"

 

The thing is, sh'e so smart. She ended up writing down a pretend school schedule that mimicked the hours she slept. Once she figured it out, it was over and now she's fine. This happens with her homework a lot. I told her teacher that I often won't correct her mistakes because it will send us into this for the rest of the night.

 

My trouble is I don't know how to not get engaged. I feel like I don't have what it takes to ignore her. When she is like this, the anger and fear and frustration builds up inside until I feel crazy. It only makes it worse, for her to see me upset or angry. I know this but I can't seem to just stay calm. It upsets her if I ignore her and it upsets her if I respond to her so I have no idea what to do.

 

At least it only lasted for 20 minutes. It would have been hours before. In the middle of it I had her pop some motrin and L-Theaning. Maybe that helped. Now she's fine and I feel drained. I've felt like the abused parent for a long time.

 

Susan

 

I certainly don't have the answer to this, but I wanted you to know you are far from alone. The frustration to anger to rage meltdown cycle is one I know all too well. He flies off at any suggestion I make but I am also not allowed to be absent from it eihter. I pace or sit and gently rock. I have several 3X5 cards with everything from Bible passages to quotes from other inspirational texts, all of which speak of maintaining hope and love. I read them over and over again to myself while he goes through what he goes through and look for any shred that I can grab hold of to get me through that moment. They always pass, we are always both exhausted after. Afterwards I begin a DEDICATED search for even thesmallest non-PANDAS thing he does to be openly thankful for. I use it as evidence of him getting back on his feet after being knocked down again and trying again to reclaim his life. It has been hard in the darkest moments to not lump him in as part of the enemy and I'm always working to distinguish clearly it is he and I versus this disease, not he and the disease versus me. Stay strong and know you're not alone.

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Thanks you guys, it does help to know that others experience this too. Thank you for your understanding and support!

Right now she is worried that I am mad because I got frustrated that she was not letting go of a subject. She's having a hard day and so am I. I need to step back and relax a little.

 

Vickie, you did remind me that often all she wants is a hug but she can't ask for it. A hug is the last thing I want to offer, especially since she won't always accept it. But I should remember to try. I will try the breathing technique too.

 

Susan

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Hi - I've realised that I get so cross (as well as the usual frustration) 'cos I'm scared. My response to fear is anger and I've realised that the very outward signs of the illness make me super cross cos I'm scared and I take it out on my dd if I'm not careful and often regret things I've said or done. If I can deal with my fear better, I don't get so angry and I can deal with her better.

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My trouble is I don't know how to not get engaged. I feel like I don't have what it takes to ignore her. When she is like this, the anger and fear and frustration builds up inside until I feel crazy. It only makes it worse, for her to see me upset or angry. I know this but I can't seem to just stay calm. It upsets her if I ignore her and it upsets her if I respond to her so I have no idea what to do.

Susan

 

 

susan - have you read the explosive child? i've found it very helpful for these situations. it's the only way i've found to disengage. you just repeat back what she's saying in a neutral tone. don't offer help, suggestions, thoughts - nothing - just repeat her words back. it keeps you out of it while not ignoring her. i'm not sure if i think it's so much a helpful technique for him as it is for me.

 

my son gets further annoyed with any other type of help - at the time, he can't accept any suggestions, ideas, etc. i've been very surprised that this repeating back doesn't annoy him and he doesn't even seem to realize what i'm doing.

 

once he's more calm, we can try to work on a solution together.

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When this happens at our house, it's "perfection" OCD - my son will insist that he get something perfect, usually his handwriting, but also other things, before he can move on. He'll also get very critical of himself and say things that make me really worry about his self-esteem.

 

DJ has named his OCD "Stupid Guy". So if this sort of thing happened at our house, and my son were at the top of the stairs having a meltdown, I would have given him my full attention and said "I know Stupid Guy is behind this. He is ruining your morning and making you get stuck on this thing so that you have to pay attention to him instead of having fun without him. You know that you are the boss, and that if you make him, he has to listen to you. So tell him that you are going to ignore him and not do this math problem about how many hours you slept until after you've eaten breakfast (this is a delay tactic he and I have worked on in "What to do when your Brain gets stuck").

 

If DJ continued to be stuck, I'd tell him, with as much empathy as I could muster, that I understood how hard this was, but that I wasn't going to help Stupid Guy. That if I stayed on the stairs, we'd both be giving Stupid Guy our attention and that only makes him bigger and stronger. So because I love DJ, I was going to take my energy away from Stupid Guy and go to the kitchen to get breakfast. And then I'd do just that. DJ now understands that I'm not being mean and that he is the only boss. He hates that he has to do the hard work, but he knows that if I try to do the work for him 1) it doesn't work and 2) it only makes Stupid Guy think he has to listen to me and not DJ, which is very bad because I'm not with DJ a lot of times.

 

When we first started this, I'd get lots of whines about how hard it was, how he couldn't help it...After a few weeks of practicing in small ways and making huge celebrations out of minor successes, it did start to get easier. Stupid Guy still loves to push the "perfection" button when DJ is struggling with PANDAS symptoms, but the meltdowns have turned into minor, short stomps and grunts of frustration, sometimes an occasional eraser gets thrown across the room. But by thinking of Stupid Guy, I can distance myself without feeling like I'm abandoning my son and he understands that it's not him I'm frustrated with, but the OCD. It depersonalizes things and lets us both focus on the real problem, which is the OCD.

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Just to bring up what LLM said- the workbook- What to do when your brain gets stuck- is amazing. It was recommended to me by Meg's mom. I found when in a full blown episode, it didn't seem to be helping- but once my daughter started calming down, it was clear she had heard what we were reading. It gives the parent and child a language and strategy for dealing with ocd, and you can refer back to it daily. Everyone here that has a child with ocd should get it (I ordered mine on amazon).

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Just to bring up what LLM said- the workbook- What to do when your brain gets stuck- is amazing. It was recommended to me by Meg's mom. I found when in a full blown episode, it didn't seem to be helping- but once my daughter started calming down, it was clear she had heard what we were reading. It gives the parent and child a language and strategy for dealing with ocd, and you can refer back to it daily. Everyone here that has a child with ocd should get it (I ordered mine on amazon).

 

Is this the right one?

 

http://www.amazon.com/What-When-Brain-Stuc...9178&sr=8-1

 

LLM, I like this idea. I've been trying to talk with her about what is pandas. This might help.

 

Smarty, I have not read that book but I have heard a lot about it. Maybe it's time to make some purchases. I can't imagine this technique working on dd without it making her mad, but who knows right?!

 

Susan

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Just to bring up what LLM said- the workbook- What to do when your brain gets stuck- is amazing. It was recommended to me by Meg's mom. I found when in a full blown episode, it didn't seem to be helping- but once my daughter started calming down, it was clear she had heard what we were reading. It gives the parent and child a language and strategy for dealing with ocd, and you can refer back to it daily. Everyone here that has a child with ocd should get it (I ordered mine on amazon).

 

Is this the right one?

 

http://www.amazon.com/What-When-Brain-Stuc...9178&sr=8-1

 

LLM, I like this idea. I've been trying to talk with her about what is pandas. This might help.

 

Smarty, I have not read that book but I have heard a lot about it. Maybe it's time to make some purchases. I can't imagine this technique working on dd without it making her mad, but who knows right?!

 

Susan

 

That is the correct book. If you want some others about OCD techniques for parents, here is the thread about those. http://www.latitudes.org/forums/index.php?showtopic=6616.

 

Also, we have a non-profit group that has trained a number of therapists in the Charlotte area, that may be able to help with parenting techniques during mild episodes. PM me if you want some names. During an exacerbation, or even mild episodes, I now think of myself as the parent of a child with special needs. And I had to learn a lot of new parenting techniques to be an effective mom for the child that I am blessed with. I'm not always the parent that I saw in my dreams, but I'm a better parent for this child, with this disease, and that is all that matters to me anymore. I spent a decent amount of time not getting involved in the OCD ritual, but instead saying things like "I am so sorry that OCD is making you feel this way. I know that is not how you want to feel. I can't help the OCD however - I can only help Meg. Can you let me know if you want help to fight back? How about if you pick the tool that you want to use". It can be really hard, especially at first, but once it starts to help, it is the best feeling in the world.

 

(For anyone new, the best tool we found was Azith - but we find that ERP tools are really helpful, once practiced a lot, at keeping life manageable even in the worst of times - and that it is a wonderful help when we are trying to get rid of residual OCD).

 

Good luck - hope the workbook is helpful to both of you in developing a language and way to talk about what is happening.

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For any of you with younger children, we used to have a great picture book entitled, "Mr.Worry" about OCD that we read to our son often. Out of all the kids OCD books we've tried over the years, this one was the one he connected to the most. There is a page about a little boy having a strange thought that his mom was an alien, and I still remember the total look of relief on my son's face when he said "sometimes I think that about you!" We referenced that book a LOT for him over the years. Unfortunately, in a rage a few years ago, he was so sick and tired of his OCD controlling and ruining his life that he symbolically and very dramatically ripped this hard cover book to shreds. Someday, we'll replace it for him. Maybe for high school graduation (ha ha).

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OK, buying What To Do When Your Brain Gets Stuck and Mr. Worry tonight. I'll try to find the Explosive Child from the library although I'm thinking I may just want to buy it.

 

I'll wait and see if I'd like to just have it around. I've gotten help in the past from books on sensory kids like Raising A Sensory Smart Child and Out of Sync Child but I think I need something more like this one recommended here.

 

She continues to struggle. Tonight she said she is getting a lot of twitches that she can't control in her fingers and feet that show up when she is scared but also other times too. I don't think the zith is doing it's trick any more. :(

 

We see our Ped. Neurologist at the end of March. I'm going to start talking about IVIG.

 

Susan

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